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My 88-yr-old mother has moderate dementia, but has been determined to have “full decisional capacity.” At her insistence, she lives alone in her small home; we kids all live thousands of miles away (her choice; she moved away decades ago). She absolutely refuses to consider assisted living. We have in-home assistance three days a week (which she resents and complains about) for her. We have been through two different agencies and have just lost her fifth caregiver. After a few weeks of each one, my mother manufactures a conflict, and then tells the agency she is “afraid of them,” and they (so far) have then sent someone else. A few weeks later, it all happens again. Any time someone does something she dislikes, she claims to be afraid of them - she has said it to me about my brother, about me to my sister, about a plumber who gave her an estimate higher than she expected for a repair job, about a caregiver who questioned why she had to go to the bank for a task they had addressed two days before, etc. She has always been a hugely anxious person, and has been on various meds to manage it, so “fear” has long been her go-to response for any kind of stressor. But it seems to now be a technique she uses to get rid of anyone who offends her somehow, even in situations where there is absolutely ZERO threat or even annoyance. Every caregiver is criticized at length and detail for their weight, appearance, accent, education, clothes, choice of TV shows, you name it. They’re probably all glad not to go back to her. My fear is the agency will eventually say they can’t cope with her or no one will serve her any more. I’m sick to death of her endless, unjustified, and untrue complaints, and have spent hours talking with the agencies, who have been patient, understanding, and are truly doing the best they can. I’m ready to hand my mother a “come to Jesus” ultimatum: put up or shut up when these people come to help you, or you will end up in a place you’ll hate even more because I can’t deal with your interpersonal problems any more. Or are we simply at a point where this is NOT WORKING ANY MORE and a different living situation may have to be forced? This has been going on for nearly a year (after a disastrous 12-month stay in an ALF), and I am - as my handle suggests - running on fumes.

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I am going to be quite frank here, and if it rubs any aging care members the wrong way, I apologize in advance. However, taking care of these people can be a hell on earth even for the paid caregivers. I have a situation now where a client is making up lies on me and trying to act like my supervisor. I am scheduled for seven hours, and she pouts and bosses me around for the entire time. Today she tried to make a bad decision and leave me in the apartment while she went to the pharmacy. I went with her anyway since this person has balance issues with vertigo.

I am thankful for this board and the people here. Without it, I wouldn't have anything to gauge these types of situations.

I sent a separate e-mail to the staffing person who sent it to the clinical manager. It included all of the crazy things she had been doing and saying. Even though they say this person doesn't have dementia, I'm picking up something differently. She gets confused at times even in stores to the point I had to remind her that it is time to go. We went to Walmart a couple of weeks ago, and she kept going from one end of the store to the other. I chose not to say anything to her about her behavior, but I have been charting it for the nurse to see.

She uses the fear factor as well. Now Scampie is the big black monster. The funny part is that I'm older than her. The manipulation and the constant questioning if I leave the apartment to get a breather is nerve racking. You cannot expect a worker to be parked in a chair six hours straight. She gets free housing, free food, free healthcare, clothing and SSI. So, the only thing she has to complain about is keeping her room clean. It's not even an apartment. The room has a bed, bathroom and kitchen area with plenty of storage space, but it's just a room costing almost $2,000.00. She pays a couple of hundred dollars and the government pays the rest.

She has gone through a ton of Home Health Aides, and I'm probably the next one to go. I have fixed meals for her and she has thrown them in the trash. I have documented that as well. According to her case manager, she doesn't have any behavioral issues. I'm finding out now that some of these people are just plain mean and manipulative.
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BurntCaregiver Oct 2023
@Scampie

You never have to tolerate that behavior for a second. I never did in 25 years of caregiving service.

You have a right to stand up for yourself. You don't have to tolerate verbal abuse or racial slurs from anyone.

Tell the case manager the things she says to you. Then let the case manager know that you will not tolerate it from her again.
Give back to her as good as she gives it to you. I always did.

I had a few clients that I dropped from my service over the years because their abuse graduated from being verbal to being physical.

You have to establish it early on that you will not be disrespected. When you do this, they won't act up with you.
They'll talk about you to anyone who will listen, but they will behave during your hours with them.

I totally get you and the resentment over people like your client who get everything for free and then expect their free caregivers to be like the servants on 'Downton Abbey'.
Put this client in her damn place. Enough is enough.

I instruct my caregivers that if a client is trying to leave on their own to call the police and tell them someone is eloping. If a client is having a tantrum and behaving abusively they are to call me immediately. I will come out if I have to. I'm not having any of my girls bullied or treated abusively.

We have a policy and I think it's a good one.
Care about your workers. If client complaints are excessive and I find that the caregivers are not at fault, that client is dropped from our service. My aides are the cream of the crop and I will not see them treated badly by clients or taken advantage of by client families.
I've dropped a few clients and fired a couple of aides.


Go look in your messages. I laid it out for you on how to deal with your agency too.
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88 with moderate dementia sound like someone that reached the "this is not working stage" some time ago. What happened at AL before? She demanded to go back home? Yikes!

I would let her know that if she does not behave and get along with her caregivers, then she'll be back in AL.
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With moderate dementia your mother has lost the ability to reason, even if she can fake it for long enough to fool some professionals. You cannot “talk sense” into her, sadly. A wise social worker friend once told me when I was at a very frustrating time “events will happen that will force change” Though it was no fun waiting on the events, her words proved very true. Sounds like this may be where you are with mom
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waytomisery Oct 2023
It is sad how some professionals tie our hands by saying our LO can still make decisions , which leaves LO in an unsafe situation , leading to a tragic event .
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To start with your mother gets away with behaving so badly to her caregivers because she is allowed to and they are not allowed to stand up for themselves. You state that she has dementia. If her dementia is so advanced that she has no control over her behavior and doesn't realize she's lying, she needs to be placed for her own good and safety.

Call the next agency you plan on using and have a meeting with them. Let them know that it is fine for their caregivers to put your mother in her place if she starts up about their appearance, weight, accent, whatever.

Instruct them to say the following:

No one cares about your opinions on anything or anyone least of all me.
I (or we) are the last caregivers that are going to be sent to you. If you decide to continue being a bully and an a$$hole to me (or us) the agency I work for will call the state. Then APS (explain to her what that is) will come and you will be put in a nursing home whether you agree to it or not.

I was an in-home caregiver for 25 years and have said these words to clients like your mother many times. Believe me when I tell you, it works. She will stop giving her caregivers such a hard time.
If it doesn't work then she is likely too far gone with dementia for homecare to meet her needs and she should be placed.
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Scampie1 Oct 2023
Burnt, this is true. You are not allowed to take a stand. The only other option is to leave the case if it so bad. One way a Home Health Aide can tell a bad case is if a certain name keeps appearing on the list of open cases on a regular basis. When I was new to this electronic system, I kept seeing cases that kept popping up. These agencies are aware these clients are problematic people and continue to send aides in there anyway. It doesn't work out. The client fires the aide, the aide has wasted their time and money going to a case that resulted into nothing. The patient gets away with their bad behavior and the search for an aide begins all over again. Its a no win situation for everyone involved except for the agency. The agency gets paid for the service provided and will get angry at the aide if she leaves because she can no longer stand the abuse. Aides are not going to take this abuse for the long term. Also, I don't treat agency work as a real job because in actuality, it is gig work. It does not provide the stability a full time job with benefits does. There is no health insurance, personal leave or sick leave. If you miss a day at work, you don't get paid. If the client fires you, you are out of a job for the week, month or six weeks. There will be hell trying to collect unemployment insurance. It is a good way to end up homeless if you don't keep on top of things. I would not be doing this type of work if I was not retired. My plan is to return to work full time in another industry.
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These fears of strangers your Mother has... I'm trying to imagine if I lived alone, needed help but had different people, some older, some younger, different accents, different mannerisms. 'Afraid' or 'fear' may be just a much easier way to explain that uncomfotable feeling. Some poeple may like being 'Head of Household' & perfectly able to express clearly what they want done, how & when.

Others, like my LO, want to be in control but find it much harder to communicate to strangers.

Has your Mother ever tried respite care?
Yes a whole building full of strangers - staff with many accents & manerisms too I'm sure BUT the same residents, often many of the same cleaners, meal staff, reception, hairdresser & many permanent care staff.

I suppose it's like being in an air bnb with other unknown guests (awkward) VS staying in a hotel (where you expect staff to be) so it feels ok.

Coz that's really the choice: home with staff visiting or live in a group setting with staff.
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So sorry you have to go through this.

I have to say though.....
Too bad she left ALF and made it back to her house !!

Does anyone have POA? How long ago was she determined to still have full decisional capacity ?

Just because she still can make decisions, doesn't mean she is safe at home alone. Maybe she still is , maybe she isn't. She is being very manipulative as well, perhaps to hide the fact that she is struggling with daily life.

You don't say what kind of care she needs. My mother refused any "strangers in the house". She also did not think she needed help. She stopped washing, changing her clothes and was living on cookies.

I would not fight with her over anything anymore. Let her fire the aides. You state she can still make decisions. That includes bad decisions.

Call the local County Area of Aging. When this was done for my mother , we were told that sometimes "you have to let them fail" before they will accept help, meaning don't help her, let her fire the aides.

They sent a social worker out to the house to assess Mom. The social worker gave my mother various scenarios and asked my mother what she would do , example fire etc. Due to my mother's dementia, she could not come up with "adequate plans". The social worker said she could not live alone and needed 24/7 supervision .The social worker tried to talk to Mom about going to ALF . Mom refused. I had already picked one out because my mother would not tour any . The social worker scheduled to come back to my mother's house 2 weeks later with a strong helper to remove my mother from her home and put her in ALF. Before the two weeks was up, my dumb sister told my aunt, who then called my mother to tell her that she was getting dumped in a nursing home. Mom ended up complaining of (fake) chest pain to avoid being taken from her home. EMS took her to the ER, They kept her for observation because of the chest pain . Mom had not yet been diagnosed for dementia because she refused to go for tests. I had the hospital test her , and confirm dementia and the social worker at the hospital, spoke with the social worker that came to the home. A few days later Mom went right from the hospital to the room i picked out at ALF.

Your mother is stubborn , and has fears and most likely is not going to cooperate, Call the Agency of Aging to do an assessment and go from there.
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Do you have POA? You maybe able to force placement. But first you need to get someone to say she needs 24/7 care. Mom will get worse. Not being able to reason is one of the first things to go. If they can't reason, they can't make informed decisions. I would call her local Office of Aging and see if a SW can see her.
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